♪ ♪ ♪ ♪ >> THERE IS A LOT OF INFORMATION OUT THERE ABOUT US, BUT WHO IS COLLECTING IT AND TO WHAT PURPOSE?

STAY WITH US AS WE TALK WITH Dr. THOMAS TUCKERS OF THE KENTUCKY CANCER REGISTRY ABOUT HOW DATA CAN KEEP US HEALTHY NEXT ON "KENTUCKY HEALTH."

>> "KENTUCKY HEALTH" IS FUNDED IN PART BY A GRANT FROM THE FOUNDATION FOR A HEALTHY KENTUCKY.

>> MARK TWAIN IS GENERALLY CREDITED AS SAYING LIES, DAMN LIES AND STATISTICS.

HIS COMMENT WAS IN REFERENCE TO THE NEFARIOUS USE OF STATISTICS TO BOLSTER A WEAK ARGUMENT.

THAT SAID, GOOD DAY DATA COLLECTION, COUPLED WITH HONEST STATISTICAL EVALUATION REMAINS THE BEST WAY TO DEVELOP GOOD HEALTH POLICY.

FLORENCE NIGHTEN GAIL IS WIDELY RECOGNIZED AS THE FOUNDER OF MODERN NURSING.

HOWEVER, SHE IS NOTED IN A PIECE IN A COLLECTION OF BIOGRAPHIES OF WOMEN MATHEMATICIANS SPONSORED BY AGNES SCOTT COLLEGE IS EQUALLY RENOWNED FOR HER APPLICATION OF STATISTICAL ANALYSIS.

DURING THE CRIMIAN WAR, THE CAUSES FOR MEDICAL PROCEDURES WAS NEAR 50%.

THE STATISTICAL ANALYSIS OF HER COLLECTED DATA LED TO CHANGES AWAY FROM THE EXISTING SANITARY PRACTICES AND THE ADOPTION OF A NEW GUIDELINE.

THESE CHANGES RESULTED IN A SIGNIFICANT DROP IN PREVENTIBLE MORTALITY RATES.

HEALTHCARE POLICY AND TREATMENT DECISIONS ARE NOT MADE IN A VAC UMENT.

THOSE WHO OFFHANDEDLY DISMISS THE SCIENTIFIC METHOD DO SO AT THEIR OWN PERIL.

MANY OF OUR FAMILY AND FRIENDS ARE ALIVE TODAY THANKS TO THE RESEARCHERS WHO MINE THE REAMS OF HEALTH RELATED DATA AND GIVE DIRECTION TOWARD THE BETTER PREVENTION AND TREATMENT OF MANY DISEASES TO DISCUSS WHAT AND DATA IS COLLECTED,.

WITHOUT PRESCRIBING A SINGLE PILL OR A KNIFE TO THE SKIN HAS SAVED MORE LIVES AND MADE LIVING BETTER FOR MORE PEOPLE IN KENTUCKY AND PROBABLY THE U.S., THAN ANY SINGLE GROUP OF PHYSICIANS THAT I KNOW OF.

HE IS A HERO OF MINE AND THAT'S PUTTING IT MILDLY.

I'M NOT ALONE IN THAT SENTIMENT.

TOM GRADUATED FROM THE UNIVERSITY OF KANSAS WITH A BA.

IN POLITICAL SCIENCE.

HE THEN OBTAINED HIS MASTER OF PUBLIC HEALTH IN MEDICAL CARE ORGANIZATION AT THE UNIVERSITY OF MICHIGAN.

FOLLOWED BY P.H.T.

AT THE UNIVERSITY OF KENTUCKY MEDICAL SOCIOLOGY.

THE NUMBER OF POSITIONS HE HOLDS ARE TOO NUMEROUS FOR ME TO MENTION NOW BUT GERMANE TO TODAY'S TOPIC, HE IS THE SENIOR DIRECTOR FOR CANCER SURVEILLANCE AND ASSOCIATE DIRECTOR AT THE MARQUIS CANCER CENTER UNIVERSITY OF KENTUCKY AND PROFESSOR IN THE DEPARTMENT OF EPIDEMIOLOGY AND ENVIRONMENTAL HEALTH IN THE COLLEGE OF PUBLIC HEALTH AT THE UNIVERSITY OF KENTUCKY.

Dr. TUCKER, TOM, IT'S A GREAT PLEASURE HAVING YOU HERE.

>> THANK YOU, Dr. TUCKSON, AN HONOR TO BE HERE.

IN CASE SOME OF THEM DON'T, THERE IS AN IMPACT ON CANCER CARE IN KENTUCKY AND THE NATION SO THANK YOU FOR THAT AS WELL.

SOMETIMES WE HEAR THE TERM, BUT WHAT DOES IT ACTUALLY MEAN, OF COURSE?

I'M NOT SURE I CAN GIVE YOU THE EXACT DEFINITION, BUT LET'S TALK ABOUT THE KINDS OF HEALTH DATA, SO WHEN YOU GO TO YOUR PHYSICIAN, HE OR SHE RECORDS YOUR BLOOD PRESSURE, YOUR CHOLESTEROL LEVELS ARE TAKEN PRIOR TO YOU USUALLY GOING TO YOUR PHYSICIAN.

YOU GET REPORTS ON YOUR CREATININ, REPORTS ON YOUR A1 C AND THEY'RE SINGING ABOUT THE A-1 DR WHICH IS WHICH I FIND ENTERTAINING BUT THAT DATA HELPS YOUR PHYSICIAN KEEP YOU HEALTHY.

IT IS RECORDED SO THAT YOUR HEALTHCARE PROVIDERS, THE PHYSICIANS, THE SURGEONS THAT TAKE CARE OF YOU, HAVE THAT DATA TO KEEP YOU HEALTHY AND TO KNOW WHAT HAS HAPPENED IN THE PAST THAT IS PUBLIC HEALTH SURVEILLANCE SO THIS IS DATA THAT WE USE TO HELP PREVENT THE DISEASE OR TO PREVENT THE SPREAD OF THE DISEASE.

SO, FOR EXAMPLE, THERE ARE STATE STATUTES THAT REQUIRE IF YOU HAVE MENINGITIS THAT IT WOULD BE REPORTED SO THAT WE CAN QUICKLY ISOLATE PEOPLE WHO HAVE BEEN INFECTED AND MAKE SURE THAT THE PEOPLE WHO OF EXPOSED ARE TREATED PROPERLY.

THERE ARE MANY OF THOSE KINDS OF THINGS, AND THEN THERE ARE LARGE SYSTEMS, LIKE THE KENTUCKY CANCER REGISTRY.

NOW JUST TO BE CLEAR, CANCER IS THE SECOND LEADING CAUSE OF DEATH IN THE UNITED STATES FOR ANY REASON, FOR ANY REASON.

NOT JUST FOR HEALTHCARE REASONS, FOR ANY REASON.

SO IT'S A HUGE IMPACT ON OUR MORTALITY.

IF WE DON'T HAVE INFORMATION ABOUT WHO GETS IT, DOES IT HAPPEN MORE IN MEN OR WOMEN, ABOUT WHERE IT OCCURS, ARE THERE ENVIRONMENTAL FACTORS.

AND SO FORTH, WE HAVE NO WAY OF USING OUR LIMITED RESOURCES TO SCREEN PEOPLE, TO HELP PREVENT THE DISEASE, TO FIND IF EARLY TREATMENTS ARE EFFECTIVE.

THOSE ARE MY THREE BIG DEDUCTS OF HEALTHCARE DATA.

THERE ARE MANY OTHERS.

BUT THOSE ARE THE ONES THAT I THINK MAYBE MOST BE GERMANE FOR TODAY'S CONVERSATION.

>> WHEN WE TALK ABOUT CANCER, TELL US HOW THE DATA IS COLLECTED AND TELL ME ABOUT ONE OF THE MOST WONDERFUL GROUPS I'VE WORKED WITH, THE TUMOR REGISTRARS?

NEVER MET ONE I DIDN'T LIKE.

>> THEY'RE PHENOMENAL GROUP OF PEOPLE.

AND JUST TO BE CLEAR, THESE ARE THE INDIVIDUALS WHO HAND CURATE MUCH OF THE DATA THAT'S COLLECTED NOW.

NOW THAT IS A PRETTY COMPLICATED PROCESS IN MODERN ERA WHERE COMPUTERS ALLOW US TO GET SOME OF THIS ELECTRONICALLY.

BUT ESSENTIALLY, THERE ARE ACTIVE SURVEILLANCE PROGRAMS AND THE KENTUCKY CANCER REGISTRY OR CENTRAL CANCER REGISTRIES IN GENERAL, ARE REALLY THE ONLY EXAMPLES WE HAVE, PRETTY MUCH OF ACTIVE SURVEILLANCE.

AND THAT MEANS THERE ARE STATE LAWS WHERE ALL OF THE INFORMATION ON THE TREATMENT OF EVERY CANCER PATIENT IS REPORTED TO THE CENTRAL REPOSITORY.

THIS IS NOT TRUE JUST IN KENTUCKY.

THIS IS TRUE IN EVERY STATE AND TERRITORY IN THE UNITED STATES NOW.

NOW, SOME ARE MORE CAPABLE OF DOING THIS THAN OTHERS.

BUT EVERYONE HAS ONE OF THESE REPOSITORIES.

PUBLIC HEALTH REPOSITORIES SO WE CAN KNOW THE INCIDENTS OF THE DISEASE, WE CAN KNOW DOES IT OCCUR MORE OFTEN IN PEOPLE BY RACE, BY GENDER, BY AGE, BY PLACE?

ARE THERE ENVIRONMENTAL FACTORS AND ABSENCE SENT THAT DATA 12 WE WOULD HAVE NO IDEA WHERE WE HAD HIGH RATES.

I DESCRIBE IT AS BEING THE EYES OF OUR PUBLIC HEALTH EFFORTS.

IF WE DID NOT HAVE THAT DATA, WE WOULD BE BLINDED.

WE WOULDN'T KNOW HOW TO PROCEED.

WE WOULDN'T BE ABLE TO SEE THE PROBLEMS AND WOULD NOT BE ABLE TO MEASURE THE IMPACTS OF OUR EFFORTS TO AMELIORATE THAT PROBLEM.

>> WE ARE CONCERNED ABOUT PEOPLE HAVING ACCESS TO OUR DATA WITHOUT OUR PERMISSION.

HOW DO THE HIP HIPPA LAWS COME INTO PLAY AND HOW DO WE MAINTAIN PRIVACY?

>> HIPPA IS THE HEALTH INSURANCE PORTABILITY-- I'M HAVING A SENIOR MOMENT.

I LOVE IT.

AND ACCESSIBILITY ACT.

SO IT WAS PASSED SEVERAL DECADES AGO WITH THE IDEA OF PROTECTING YOUR HEALTH INFORMATION.

NONE OF US WANT OUR OWN PERSONAL HEALTH INFORMATION, THOSE OF OUR FAMILY AND OUR FRIENDS AND RELATIVES, TO BE JUST GENERALLY AVAILABLE TO ANYBODY WHO WANTS THEM.

THEY SHOULD BE HELD CONFIDENTIAL AND THAT'S REALLY WHAT THE HIPPA BILL DOES.

HOWEVER, VERY SPECIFICALLY, IN HIPPA, IT DOES NOT EXEMPT, BUT IT TREATS PUBLIC HEALTH SURVEILLANCE AS A PLACE THAT CAN RECEIVE THAT INFORMATION.

SO ALL PUBLIC HEALTH SURVEILLANCE IS ABLE TO RECEIVE IDENTIFIABLE DATA.

BUT, LIKE THE REGISTRY, WHAT HAPPENS IS WE THEN INHERIT THE RESPONSIBILITY TO HOLD THAT DATA CONFIDENTIAL AND NOT ALLOW IT TO BE FURTHER RELEASED WITHOUT THE PATIENT'S CONSENT.

>> SO IF A RESEARCHER WANTS TO GET ACCESS TO THE INFORMATION, THEY'VE GOT TO GO THROUGH... >> THEY COME TO US, AND WE HAVE TO CONTACT-- IF THEY NEED THE IDENTITIES OF THE PATIENTS-- NOW THAT WOULD MEAN IF THEY NEEDED TO CONTACT THE PATIENT PERSONALLY SO THEY NEED THEIR IDENTIFYING INFORMATION.

WE NEED THAT PATIENT'S PERMISSION TO RELEASE THAT TO THE INVESTIGATOR AND WE HAVE A WHOLE SYSTEM IN PLACE AND PEOPLE HAVE THE RIGHT TO OPT OUT OF IT AND SOMETHING WE REALLY HONOR.

WE ALSO WANT TO HONOR THEM THE OPPORTUNITY TO RESEARCH AND PARTICIPATE THAT EVEN IF IT DID UNIT NECESSARILY AFFECT THEIR OWN PERSONAL CASE, IT MIGHT REALLY MAKE A GREAT DIFFERENCE AND HAS HISTORICALLY IN THE LIVES OF PEOPLE WHO WILL BE DIAGNOSED IN THE FUTURE.

>> WHAT ARE THE MOST COMMON CANCERS WE ARE SEEING IN KENTUCKY RIGHT NOW?

>> SO THE MOST COMMON CANCERS ARE LUNG, COLORECTAL, BREAST AND PROSTATE CANCER; HOWEVER, WE SEE THERE ARE FOUR CANCERS, LUNG, BREAST, COAL OWE COAL OWE RECOLLECTAL-- COLORECTAL AND CERVICAL CANCER APPROVED BY THE TASK FORCE AND IF WE APPLY THE INTERVENTIONS EFFECTIVELY, WE CAN HAVE A DRAMATIC IMPACT ON THE CANCER BURDEN IN THE COMMONWEALTH BECAUSE IT'S 40% OF ALL THE CASES THAT OCCUR EVERY YEAR.

>> WOW.

>> 40%.

>> 40% FOR THOSE FOUR CANCERS.

NOW, CERVICAL CANCERS ARE NOT AS COMMON BUT IT'S VERY HIGH IN KENTUCKY, THE INCIDENTS, RELATIVE TO OTHER PARTS OF THE COUNTRY.

>> I WANT TO TAKE A COUPLE OF THOSE CANCERS, COLON, LUNG AND CERVICAL CANCER TO KIND OF LOOK AT HOW DATA HAS AFFECTED OUR APPROACH TO THESE DISEASES.

SO LET'S START OFF WITH COLON CANCER, IF WE CAN.

TELL ME ABOUT SCREENING.

I THINK THIS, ALONG WITH WHITNEY JONES, AND AGAIN I'VE SAID IT BEFORE, YOU TWO GUYS ON THIS DISEASE, HAVE HAD A GREATER IMPACT IN KENTUCKY THAN ANYBODY ELSE I KNOW.

>> YEAH, WELL YOU ARE ABSOLUTELY CORRECT.

>> YOU TWO GUYS.

TELL ME ABOUT THIS.

TELL ME FROM THE BEGINNING WHERE WE WERE WITH SCREENING, AND WHERE WE ARE NOW.

>> SO I JUST WANT TO REITERATE THAT ALL OF THE ACTIVITIES THAT WE ARE GOING TO TALK ABOUT HERE IN JUST A MINUTE AND THEIR IMPACT, WERE A MASSIVE GROUP EFFORT.

AND Dr. WHITNEY JONES HAS BEEN A KEY PLAYER IN THAT, AS HAVE YOU AND AS HAVE THE AMERICAN CANCER SOCIETY, BOTH THE UNIVERSITIES, UNIVERSITIES OF LOUISVILLE AND UNIVERSITY EVER KENTUCKY.

OTHER UNIVERSITIES IN THE STATE, HEALTHCARE PROVIDERS, SO IT'S A BROAD, BROAD EFFORT.

SO WHEN WE-- I'M TRYING TO THINK ABOUT HOW TO PUT THIS TOGETHER.

WHEN WE BEGAN IN EARLY 2000, WE SAW FROM DATA, THAT KENTUCKY HAD THE HIGHEST COLORECTAL CANCER INCIDENTS IN THE COUNTRY COMPARED TO ALL OTHER STATES.

AND WE HAD THE SECOND TO THE LOWEST SCREENING RATE, BASED ON DATA FROM THE CDC.

WE WERE 49th OUT OF 50 STATES.

>> 49.

WOW.

>> AND SO IN 2002, WE INITIATED THIS REALLY AGGRESSIVE SCREENING PROGRAM.

WE HAVE A PROGRAM CALLED THE KENTUCKY CANCER CONSORTIUM THAT BRINGS TOGETHER MORE THAN 70 ORGANIZATIONS, ALL I'VE NAMED AND OTHERS.

THEY ADDRESSED THIS FROM A POLICY STANDPOINT WE HAVE ORGANIZATIONS LIKE THE AMERICAN CANCER SOCIETY.

PROVIDERS WERE ENGAGED IN THIS TO INCREASE COLORECTAL CANCER SCREENING.

IN THE NEXT EIGHT YEARS, WE WENT FROM ONLY ONE THIRD, ABOUT 35% OF THE POPULATION BEING SCREENED TWO MORE THAN TWO-THIRDS.

IT'S NOW 75% BUT THAT INCREASE WAS GREATER THAN ANY OTHER STATE IN THE UNION.

IT'S DRAMATIC AND WHAT IS IMPORTANT ABOUT THAT, WHEN YOU INCREASE SCREENING, YOU FIND MORE PRECANCEROUS POLYPS AND THESE ARE REMOVED AND THAT PERSON, WE ACTUALLY PREVENT THE DISEASE IF I HAVE MY DATA RIGHT AND SOMEBODY WILL TELL ME IF I DON'T, ROUGHLY EVERY 11 TO 14 COLONOSCOPIES PRODUCE OR SHOW POLYPS.

THE EVIDENCE IS OVERWHELMING THAT WE CAN REDUCE THE INCIDENTS OF THE DISEASE.

WE ARE PREVENTING THE DISEASE.

SO IF YOU WERE TO LOOK AT THE INCIDENTS OF THE DISEASE, WE STARTED WITH THE HIGHEST INCIDENTS COMPARED TO ALL OTHER STATES AND IN 2002, WE INITIATEED THIS, AND WE REDUCED IT BY 30% WHICH IS DRAMATIC.

AND IF YOU LOOK AT THE MORTALITY RATES, SO, WE HAD THE HIGHEST MORTALITY RATES IN THE COUNTRY.

WE REDUCED IT BY 34%.

WE ARE NO LONGER NUMBER 1 FOR INCIDENTS IN MORTALITY.

NOW WHILE I'M VERY PROUD OF THAT, I HAVE TO BE HONEST THAT WE STILL HAVE WAY TOO HIGH RATES.

WE HAVE SOME OF THE HIGHEST RATES OF EARLY AGE ON SET COLORECTAL CANCER DEFINED OF PEOPLE DEVELOPING THE DISEASE BEFORE AGE 50.

WE STILL HAVE MANY CHALLENGES TO GO, BUT IF I COULD PUT THOSE MEASURES IN CONTEXT, WE COULDN'T HAVE SEEN THAT PROBLEM WITHOUT THE DATA.

AND AS A CONSEQUENCE OF THIS MASSIVE EFFORT THAT WENT ON, TODAY, THERE ARE 680 KENTUCKIANS WHO NO LONGER GET COLORECTAL CANCER EVERY YEAR.

AND THERE ARE 240 WHO NO LONGER DIE OF IT EVERY YEAR.

THAT'S A PRETTY SIGNIFICANT PUBLIC HEALTH IMPACT.

>> I THINK IT'S HUGE.

AND WE ARE LUCKY HERE IN KENTUCKY THAT WE DO HAVE ALL THESE ORGANIZATIONS.

IT'S IMPORTANT THAT EVERYBODY HAD TO PUT THEIR EGOS AT THE DOOR.

THIS IS ONE OF THOSE OF SUCCESS WHEN WE ALL WORK TOWARD-- IF I REMEMBER CORRECTLY, ONE OF THE COMMERCIALS FOR, THE PRESIDENT OF KENTUCKY, THE PRESIDENT OF LOUISVILLE, I BLEED BLUE OR RED, WE ARE ALL ABOUT KENTUCKY.

>> AND I THINK THAT'S-- IT'S REALLY AMAZING WHEN YOU PUT ASIDE YOUR PERSONAL AND INSTITUTIONAL INTERESTS, AND SAY WE ARE REALLY GOING TO COLLABORATE.

IT IS AMAZING THE IMPACT YOU CAN HAVE.

>> SHIFT GEARS IF YOU WILL.

LUNG CANCER IS THE NUMBER ONE CANCER LEADING CAUSE OF DEATH.

HOW ARE WE USING THE DEBATE TO MAKE CHANGES IN THIS DISEASE?

>> SO I REALLY APPRECIATE THAT QUESTION BECAUSE I HAVE BEEN HERE FOR 40 YEARS AND DEVOTED A BIG PORTION OF MY LIFE TRYING TO REDUCE THE IMPACT OF SOME REALLY EXTRAORDINARY HEALTH ISSUES.

AND PARTICULARLY IN THE APPALACHIAN AREA OF KENTUCKY, THE LUNG CANCER INCIDENTS RATE IS EXTRAORDINARY.

AND I DID NOT THINK THAT I WOULD SEE AN IMPACT BEFORE I RETIRED.

JUST TO GIVE YOU A CONTEXT, KENTUCKY HAS THE HIGHEST LUNG CANCER INCIDENTS AND MORTALITY RATES IN THE COUNTRY AND HAS FOR MANY DECADES.

THE INCIDENTS RATE IN THE APPALACHIAN AREA OF KENTUCKY IS OFF THE CHARTS.

103.8 PER 100,000 CURRENT POPULATION COMPARED TO THE U.S.

WHICH IS 58.

IT'S ALMOST DOUBLE.

BUT IN 2011, THE RESULTS OF A LARGE CLINICAL TRIAL LOOKING AT LOW DOSED COMPUTED TOMOGRAPHY TO SEE IF WE COULD IDENTIFY AT RISK PATIENTS, NOT FOR EVERYBODY, THIS IS FOR AT RISK PATIENTS, IF WE COULD IDENTIFY THE DISEASE EARLY, SO THE REASON OUR MORTALITY RATES, NOT JUST IN KENTUCKY BUT NATIONALLY ARE SO HIGH, IS IT'S JUST DIFFICULT TO FIND IT EARLY.

SO THE RESULTS OF THAT STUDY WERE PUBLISHED AND SHOWED THAT IF THE AT RISK POPULATION WERE SCREENED, WE COULD REDUCE THE MORTALITY RATE BY 20% AND AS A RESULT OF SHIFTING THE STAGE OF DIAGNOSIS FROM LATE TO EARLY STAGE DISEASE.

SO IN 2013, THE U.S. PREVENTIVE SERVICES TASK FORCE RECOMMENDED THAT THIS BE DONE FOR ALL AT-RISK PATIENTS.

KENTUCKY, AGAIN, BECAUSE OF A WONDERFUL COLLABORATIVE EFFORT OF MANY PEOPLE, HAS THE SECOND TO THE HIGHEST SCREENING RATE FOR AT-RISK PATIENTS FOR LUNG CANCER USING LOW DOSE COMPUTED TOMOGRAPHY AND YOU CAN SEE THE RATES HAVE DROPPED DRAMATICALLY AS A RESULT OF THAT AND MORE RAPIDLY IN THE APPALACHIAN AREA OF KENTUCKY THAN EITHER THE NON-APPALACHIAN AREA OR OUR OTHER REGISTRIES WHICH ARE CALLED THE SURVEILLANCE EPIDEMIOLOGY AND END RESULTS REGISTRY.

IT'S A COLLECTION OF ABOUT 26% OF THE POPULATION ACROSS THE U.S.

SO WE HAVE REALLY MADE SOME REAL IMPACT IN THAT.

NOW I WANT TO POINT OUT THIS IS IMPORTANT BECAUSE IT IMPROVES SURVIVAL AND WE ARE SEEING THE RESULTS OF THAT.

THERE ARE TWO THINGS THAT HAPPEN.

THE SCREENING HAPPENS SO WE ARE FINDING IT EARLIER WHEN OUR TREATMENTS ARE MORE EFFECTIVE AND WE DEVELOP SOME DRUGS, THEY'RE CLASSIFIED AS CHECKPOINT INHIBITORS, IMMUNOAL THERAPY REGIMEN THAT HAS MAJORLY IMPACT THE THE SURVIVAL AS WELL.

WE SEE A MUCH MORE SHARP DECLINE IN MORTALITY FROM IT.

SO WE ARE MAKING PROGRESS IN THAT AREA.

WHERE WE NEED TO FOCUS IS THE PUBLIC HEALTH MOST IMPORTANT AREA IS PREVENTION.

WE NEED TO GET AHEAD OF THIS AND WE CAN DO THAT BY HELPING PEOPLE NOT USE SMOKED TOBACCO, NOT BE ENGAGED IN THOSE ACTIVITIES THAT WE KNOW LEAD TO LUNG CANCER.

>> JUST AS WE ARE SEEING CHANGES IN THE WAY SCREENING IS BEING DONE, YOU KNOW, SOON WE WILL GET AWAY FROM DOING COLONOSCOPY AND DO BLOOD TESTS IN ORDER TO SEE IF SOMEBODY HAS A CANCER, THERE ARE CHANGES AFOOT IN TERMS OF HOW WE ARE USING DATA AND MAYBE EVEN NEW DATA SOURCES.

TELL ME A LITTLE BIT ABOUT TISSUE BANKING AND HOW THAT IS CHANGING WHAT YOU ARE DOING?

>> SO I'M AN EPIDEMIOLOGIST, SOMETIMES WE ARE REFERRED TO AS POPULATION SCIENTISTS SO I'M GOING TO TALK ABOUT IT IN THAT CONTEXT.

FOR THE LAST 50-60 YEARS, BASIC SCIENTISTS IN THE CELL BIOLOGY, CELL SIGNALING AREA, HAVE IDENTIFIED SIGNALING MOLECULES.

THESE ARE PROTEINS THAT LEAD TO THE IMMORTALIZATION OF A CELL AND DIVIDES UNCONTROLLABLY.

THAT'S THE DEFINITION OF CANCER.

AND THEY PUBLISHED THESE IN SOME OF THE MOST PRESTIGIOUS JOURNALS IN THE WORLD.

CELL SCIENCE, NATURE, BUT THEY'RE ALMOST ALWAYS ON RELATIVELY SMALL SAMPLES OF CONVENIENCE.

IN OTHER WORDS, THEY GET THEM FROM THE SURGEON OR SURGEONS AT THE HOSPITAL WHERE THEY MAY HAVE THEIR RESEARCH GOING ON.

BUT THEY DON'T NECESSARILY REPRESENT ANY UNDERLYING POPULATION.

I WILL TELL YOU THAT I READ AN ARTICLE IN ONE OF THOSE VERY PRESTIGIOUS JOURNALS, WHERE THE SAMPLE SIZE WAS 11.

>> 11 PEOPLE.

>> 11 PEOPLE.

AND THE PROBLEM IN AND ONE OF THE REASONS-- NOT ALWAYS.

THIS IS NOT TRUE OF ALL RESEARCH, BUT ALL TOO OFTEN THOSE SAMPLE SIZES ARE SO SMALL, THE FINDINGS ARE IDIOPATHIC.

THEY'RE NOT ACTIONABLE.

WE CANNOT MAKE THAT INTO SOMETHING THAT WILL HELP PEOPLE PREVENT THE DISEASE OR PREVENT THE CONSEQUENCES OF THE DISEASE.

SO BACK A COUPLE DECADES AGO, WE LEARNED HOW TO DO FULL GENOME SEQUENCING ON EMBEDDED TISSUE CH.

>> IN LAYMAN'S TERMS THAT MEANS.

>> WHENEVER A PATIENT GETS SURGERY AT ANY HOSPITAL, THE TISSUE FROM THAT IS PRESERVED IN FUO WR ULIN AND PLACED IN A PARAFFIN BLOCK OR DISKETTE AND IN ORDER FOR THOSE INSTITUTIONS TO REMAIN ACRED CREDITED BY THE AMERICAN PATHOLOGY-- THE AMERICAN CAP, COLLEGE OF AMERICAN PATHOLOGY.

THEIR RULES ARE THAT YOU HAVE TO STORE THOSE FOR 10 YEARS FOR ADULTS AND 15 YEARS FOR PEDIATRIC CASES.

AND THAT'S BECAUSE WE NEED SOMETIMES TO GO BACK AND LOOK AT THAT.

AND WE HAVE EXCHANGED THESE BETWEEN INSTITUTIONS WHEN PEOPLE NEED TO GO TO A DIFFERENT PLACE, SO IT OCCURRED TO ME THAT WE COULD TAP INTO THIS RESOURCE AND ACTUALLY, SINCE THE REGISTRY, AS PART OF ITS RECORD COLLECTION HAS THE PATHOLOGY REPORTS ON EVERY SINGLE CASE, WE KNOW WHERE THE TISSUE IS STORED.

WE KNOW WHAT TISSUE THERE IS, AND SO WE COULD DO STUDIES ON THAT.

>> YOU CAN GET THE DNA MATERIAL OUT OF THAT.

>> WE CAN GET THE DNA MATERIAL.

WE CAN DO RNA SEQUENCING, STUDIES ON IT AND WE HAVE A NUMBER OF ANTIBODIES NOW-- WHEN WE STARTED 20 YEARS AGO, IT WAS REALLY-- >> WHAT DOES THIS ALLOW TO YOU DO?

WHAT INFORMATION... >> IT ALLOWS TO US GET POPULATION-BASED SAMPLES OF TISSUE.

IN OTHER WORDS, IT'S A WHOLE ENUMERATION BUT MORE LIKELY A SCIENTIFIC SAMPLE, RANDOM SAMPLE TAKEN FROM THE POPULATION.

AS THE REGISTRY, WE SERVICE THE HONEST BROKER, WE HAVE LEGAL AUTHORITY TO ALL THE INFORMATION AND MATERIALS THAT DEFINE THE CASE.

WE HAVE NEGOTIATED AND WORKED WITH ALL 58 OF THE PATHOLOGY LABS.

WE KNOW WHERE THEY ARE BECAUSE WE HAVE THE PATH REPORTS.

AND WE CAN OBTAIN THOSE TISSUE BLOCKS.

THEY'RE DEIDENTIFIED.

NOTHING WITH IDENTITIES EVER LEAVES THE REGISTRY.

THEY'RE PROCESSED.

WE MAKE SOME SMALL CUTS AND MICRONS OF SLICES OF THAT.

WE CREATE SLIDES THAT GIVE US A PICTURE OF THAT TISSUE AND THE INVESTIGATORS CAN DO NEXT GENERATION DNA SEQUENCING ON THAT.

THEY CAN DO RNA SEQUENCING.

IN FACT, WE HAVE RAIL INTERESTING STUDY IN WHICH WE FOUND LONG NON-COATING RNA SEQUENCE THAT HAD NOT BEEN REPORTED BEFORE DOING THIS EXACT PROCESS.

BUT THE VALUE OF THIS IS IT REPRESENTS THE UNDERLYING POPULATION.

SO THE KENTUCKY CANCER REGISTRY NOW IS ONE OF ONLY TWO POPULATION-BASED REGISTRIES IN THE UNITED STATES FUNDED BY THE NATIONAL CANCER INSTITUTE TO DO THIS WORK.

BUT OUR PLAN IS TO TRY TO EXPEND IT OUT TO MORE OF THOSE SURVEILLANCE EPIDEMIOLOGY AND END RESULTS REGISTRIES.

THESE ARE CONSIDERED SOME OF THE BEST SURVEILLANCE PROGRAMS IN THE WORLD.

SO AN INVESTIGATOR THAT WANTED TO LOOK AT A RARE TUMOR WOULD HAVE A CHANCE TO ACTUALLY HAVE AN ADEQUATE SAMPLE THAT REALLY REPRESENTED THE UNDERLYING POPULATION.

>> IN THE SHORT ANSWER, YOU CAN TAKE MATERIAL AND BETTER FINE TUNE TREATMENT BASED UPON WHAT WE ARE SEEING?

LET ME SAY IT A LITTLE DIFFERENT.

WHEN WE FIND SOMETHING FROM A BASIC SCIENTIST IN THEIR LAB, WE CAN LOOK AND SEE HOW OFTEN DOES THAT HAPPEN IN OLDER PEOPLE OR YOUNGER PEOPLE?

HOW OFTEN DOES IT HAPPEN?

PEOPLE WHO HAVE DIFFERENT RACES?

HOW OFTEN DOES IT HAPPEN IN PEOPLE IN DIFFERENT PLACES?

ARE THEIR ENVIRONMENTAL FACTORS THAT ARE AFFECTING IT?

YOU CANNOT DO THAT ABSENT THAT POPULATION BASE SAMPLE.

>> WOW.

AS JOHNNY CARSON USED TO SAY, THAT'S SOME GOOD STUFF.

>> THANK YOU.

>> TOM, THANK YOU VERY MUCH FOR BEING WITH US.

IT'S ALWAYS A CHARGE TO HAVE YOU TALK ABOUT SOMETHING LIKE THIS.

I WOULD LIKE TO THANK YOU FOR BEING WITH US TODAY.

I HOPE THAT YOU HAVE A BETTER UNDERSTANDING HOW HEALTH DATA HELP IMPROVE THE QUALITY OF HEALTH FOR ALL OF US IN KENTUCKY.

AND THE IMPORTANCE OF GOOD STATISTICAL EVALUATION IN DECIDING HEALTH POLICY AND TREATMENT.

IF YOU WISH TO WATCH THE SHOW AGAIN OR WATCH AN ARCHIVED VERSION OF PAST SHOWS, PLEASE GO TO WWW.ket.org/HEALTH.

IF YOU HAVE A QUESTION OR COMMENT ABOUT THIS OR OTHER SHOWS, WE CAN BE REACHED AT KYHEALTH AT ket.org.

I LOOK FORWARD TO SEEING YOU ON THE NEXT "KENTUCKY HEALTH."

IF YOU HAVE NOT HAD YOUR COLONOSCOPY, PLEASE GET IT DONE.

IF YOU ARE AGE 5 AAND HISTORY OF CIGARETTE SMOKING, GET YOUR LUNG CANCER SCREENING DONE.

I DIDN'T TALK ABOUT CERVICAL CANCER, GET YOUR PAP SMEARS IF YOU HAVEN'T HAD THAT.

LOOK FORWARD TO SEEING YOU AGAIN ON THE NEXT "KENTUCKY HEALTH."

>> "KENTUCKY HEALTH" IS FUNDED IN PART BY A GRANT FROM THE FOUNDATION FOR A HEALTHY KENTUCKY.